Malignant Fibrous Histiocytoma Member Introductions

Malignant Fibrous Histiocytoma
#21

I am doing some research for a good friend who was diagnosed with MFH several months ago. She could tell you more of the specifics of her treatment thus far but as far as I know, aside from having the tumor removed from her armpit area, her other forms of treatment have been alternative ones down in Mexico. The cancer metastasized at one point but she was given a clean bill of health a few months later after this unusual alternative treatment she received in Mexico. Now that she is back home in Hawaii the wound has necrosis and a new cat scan shows more tumor growth again. We’re really worried about her and want to know what has worked for anyone, esp. for anyone that had any circumstances similar to hers.

Karuna is 60 years old and was formerly one of the healthiest people I know. Any help is very much appreciated. You can email me at jildaloomis@mac.com if you have any helpful suggestions. It is the day after Thanksgiving, 2007 and the clock is ticking as far as we are concerned so we want to do something soon. Karuna herself is online a lot working to find a cure for herself so if you wish to be in direct contact that is possible also. She is thinking of going to Germany where a combination of alopathic and other modalities are practiced.

Many thanks.

#22

My mother had MFH in the middle of her back. She went to an oncologist and he did a procedure IN HIS OFFICE and removed ALL of the growth. She then underwent 18 Radiation treatments. Her return visits to the Dr. (2) she has received a clean bill of health. Billy Bushman

-------------- Original message from Jilda mfh-cpt2974@lists.careplace.com: --------------

#23

Hi there,
I’ve never heard of a Sarcoma being removed in a Dr’s office… but i am sure glad to hear your mom is doing good now :slight_smile: I have had clean scans for MFH for going on 4yrs in january (fingers crossed ;0)
Mine was on the side of my upper arm just below my shoulder… Was your mom’s tumor very big? if it was over 5 centimetre’s they should of made sure she had wide margins to make sure they got all the cancer… just saying this in case your family were not aware of that… its good to pass on experiences to help someone else out maybe… Anyway give ur mom a hug from a fellow MFH’er :0)
My prayers and thought go your moms and your family’s way…
I’m glad she has a son who cares so much :0)

Donna
MFH…An OOPS surgery Dec/03
surgery for wide margins and
removal of more tumor end of jan/04
Clean scans since…someone is watching over us :0)

To: dlfrakes@hotmail.com
From: mfh-cpt2974@lists.careplace.com
Subject: Re: [mfh] Malignant Fibrous Histiocytoma Member Introductions
Date: Fri, 30 Nov 2007 18:21:25 -0500

#24

Hi Donna -

I’m finally in this group (from the Yahoo MFH group).

You know my MFH metastatic journey from 2000.
I was “seazskyus” from the Yahoo group.

Right now, I’m going to pick up the periodic CT scan
results that was taken 2 days ago, plus the MRI details
of the ~ 5 cm. tumor in my left chest wall/rib cage @ 4-5
rib section.

Then, I will see an interventional radiologist for a possible
cryoablation of the rib tumor. If not, the doc also does
chemoembolization procedure - that I may have done there.
After 8 open-body surgeries of MFHs since 2000, I do not
want anymore “cut-and-take” jobs, especially at my age - 76.

This group seems more active than the Yahoo MFH group.

Will try to keep members updated with my “goings on”.

With HOPE and LIFE for ALL…

StanW (formerly SEAZ-MFH)

#25

We are completely new to this condition, with surgery coming up in about a month. I am concerned about possible spread, and wonder how many of those in this group have had this.

#26

My husband had it, there have been so many improvements in care since
then. (1998)

-----Original Message-----
From: hockeyman [mailto:mfh-cpt2974@lists.careplace.com]
Sent: Monday, January 07, 2008 11:08 PM
To: Rooney, Sheila
Subject: Re: [mfh] Malignant Fibrous Histiocytoma Member Introductions

#27

I saw the interventional radiologist Tuesday, 1-8-08 - to consult for the cryoablation of the 6.7 cm. tumor on my left chest wall - projecting into the pleural space @ 4-5 rib area.

She showed me the instrument that is used for the procedure, and said that the tumor is a little too big for a go. It needs to be smaller, so that the freezing process can also kill adjacent tissue for marginal accomplishments, etc.

So, I will go see my radiation oncologist to plan for the stereotactic radiosurgery/radiotherapy treatment that he wanted to do before my arm surgery - 3+ months ago. At that time, the tumor was ~ 4.5 cm. The machine to be used will be the Novalis precision “wonder” zapper…Only two of them are in Arizona.

I also have the 10 mm. nodule in the upper lobe of my right lung - as seen on the CT of 12-26-07. This grew from 3 mm. last June. This location is too deep for an RFA or cryoablation. So, after the bigger one (left side) is treated, I will see a cardio-thoracic surgeon for options, etc.

Now, we are in the depression dumps again…

This metastatic MFH condition is really “non-stop”.

Keep tuned.

Stan & Renee Here we are -

#28

I’m confused. My email says I have a message, but I can’t seem to access this or any other message. Am I missing something? I’m signed in.

#29

hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.

#30